Talk:Patient participation

Wiki Education Foundation-supported course assignment

This article is or was the subject of a Wiki Education Foundation-supported course assignment. Further details are available on the course page. Student editor(s): Mtallan1013, Colin30, Knc007.

Above undated message substituted from Template:Dashboard.wikiedu.org assignment by PrimeBOT (talk) 06:13, 17 January 2022 (UTC)

Possible sources

The following are articles that I plan to use to edit the "Patient Participation" article:

Arora, N. K., & McHorney, C. A. (2000). Patient preferences for medical decision making: Who really wants to participate?. Medical Care, 38(3), 335-341. doi:10.1097/00005650-200003000-00010 -- First, it is important to note that this article is cited 68 times in the Psycinfo database, which speaks to its importance within the subject matter. This article finds that 69% of patients prefer to delegate decision making to physicians. Among those individuals who want to participate in decision making, increases in age led to a decrease in desire to participate, while level of education increased participation levels. Other characteristics of individuals who were more likely to take an active role in participation were: women, participants with depression, and individuals who placed a low value on their health. This article will fit best under a general introduction in the topic—possibly under a subtopic regarding who specifically wants to participate.

Bundesmann, R., & Kaplowitz, S. A. (2011). Provider communication and patient participation in diabetes self-care. Patient Education And Counseling, 85, 143-147. doi:10.1016/j.pec.2010.09.025 – This article evaluates the impact that provider communication regarding self-care behaviors among individuals with Type 2 diabetes. Those who remembered self-care information from their physicians had increased levels of self-care at home. This article may fit under a section that addresses the importance of patient participation.

Cegala, D. (2011). An exploration of factors promoting patient participation in primary care medical interviews. Health Communication, 26, 427-436. doi:10.1080/10410236.2011.552482 -- This article gives a more concrete definition of patient participation that includes information seeking and provision, assertive utterances, and emotional expressions. Furthermore, the article explores predictors of patient participation, which, just as the Arora and McHorney (2000) article, will fit well under a subtopic regarding the types of people who want to participate.

Cegala, D. J., & Post, D. M. (2009). The impact of patients’ participation on physicians’ patient-centered communication. Patient Education And Counseling, 77, 202-208. doi:10.1016/j.pec.2009.03.025 – This article explores how patients’ style of communication affects physician communication. Again, an operationalized definition of patient participation was employed that included, “seeking/verifying, information provision, assertive utterances, and expressing concerns.” Results showed that physicians engage in more patient-centered communication when speaking with high participation patients than with low. This article may fit under a subtopic re: physicians.

Cooper-Patrick, L., Gallo, J. J., Gonzales, J. J., Vu, H., Powe, N. R., Nelson, C., & Ford, D. E. (1999). Race, gender, and partnership in the patient–physician relationship. JAMA: Journal Of The American Medical Association, 282, 583-589. doi:10.1001/jama.282.6.583 - This article has some interesting findings regarding racial differences in patient participation. It seems to be a landmark piece in the topic of patient participation. — Preceding unsigned comment added by Frohmanm (talk • contribs) 08:37, 28 March 2012 (UTC)

Cribb, A., & Entwistle, V. A. (2011). Shared decision making: Trade‐offs between narrower and broader conceptions. Health Expectations: An International Journal Of Public Participation In Health Care & Health Policy, 14, 210-219. doi:10.1111/j.1369-7625.2011.00694.x – This article does an excellent job exploring the limitations of some shared decision making models, along with the strengths of a properly executed model. It will be an important component of the introduction.

Frosch, D. L., & Kaplan, R. M. (1999). Shared decision making in clinical medicine: Past research and future directions. American Journal Of Preventive Medicine, 17, 285-294. doi:10.1016/S0749-3797(99)00097-5 – A review article that has been cited 96 (!) times in the Psycinfo database. It explores all facets of shared decision making, including who participates, along with the best way of including patients in decision making. This may fit in many sections of the Patient Participation page, though I can see its importance under the physician section, in particular.

Galesic, M., & Garcia-Retamero, R. (2011). Do low-numeracy people avoid shared decision making?. Health Psychology, 30, 336-341. doi:10.1037/a0022723 – This article offers insight into who participates in shared decision making as a function of numeracy, age, and country. It will be very useful under the subtopic regarding who wants to participate in decision making.

Heisler, M., Bouknight, R. R., Hayward, R. A., Smith, D. M., & Kerr, E. A. (2002). The Relative Importance of Physician Communication, Participatory Decision Making, and Patient Understanding in Diabetes Self-management. Journal Of General Internal Medicine, 17, 243-252. doi:10.1046/j.1525-1497.2002.10905.x - This article provides an interesting look at how patient participation influences self-management strategies in patient. It will fit well in the "Benefits of patient participation" section. — Preceding unsigned comment added by Frohmanm (talk • contribs) 14:20, 28 March 2012 (UTC)

Larsson, I. E., Sahlsten, M. M., Segesten, K., & Plos, K. E. (2011). Patients' perceptions of barriers for participation in nursing care. Scandinavian Journal Of Caring Sciences, 25, 575-582. doi:10.1111/j.1471-6712.2010.00866.x – An interesting examination of the barriers patients’ face in shared decision making. Barriers include: Facing own inability, meeting lack of empathy, meeting a paternalistic attitude and sensing structural barriers. This may be a great starting point for a new heading titled “Barriers to Patient Participation.” Lyttle, D. J., & Ryan, A. (2010). Factors influencing older patients participation in care: A review of the literature. International Journal Of Older People Nursing, 5, 274-282. doi:10.1111/j.1748-3743.2010.00245.x – This article, focusing on elderly patients, provides an interesting lens into who participates in decision making and will contribute to that section.

Peek, M. E., Tang, H., Cargill, A., & Chin, M. H. (2011). Are there racial differences in patients’ shared decision-making preferences and behaviors among patients with diabetes?. Medical Decision Making, 31, 422-431. doi:10.1177/0272989X10384739 – This article will add to the who participates in shared decision making conversation by examining racial differences. The article finds that African Americans, more than Caucasian participants, initiate conversation with physicians.

Politi, M. C., Clark, M. A., Ombao, H., Dizon, D., & Elwyn, G. (2011). Communicating uncertainty can lead to less decision satisfaction: A necessary cost of involving patients in shared decision making?. Health Expectations: An International Journal Of Public Participation In Health Care & Health Policy, 14, 84-91. doi:10.1111/j.1369-7625.2010.00626.x – This article looks at patient participation from a different perspective by addressing the cons. Patient participation may contribute to less decision satisfaction.

Weingart, et al. (2011). Hospitalized patients’ participation and its impact on quality of care and patient safety. International Journal For Quality In Health Care, 23, 269-277. doi:10.1093/intqhc/mzr002 – Patient participation leads to higher judgments of the quality of care. This will contribute good information to the heading about the effectiveness of patient participation.

Frohmanm (talk) 15:45, 7 March 2012 (UTC)

A Brief Summary of Changes

The following is a brief summary of the planned structure for this article when I have completed editing it.

The introduction that is currently on the page must be expanded in order to emphasize the way that the patient and physicians work together, which involves an equal emphasis on both the patient's and physician's opinions. Shared decision making intimates a type of medical alliance between patient and physician that the current introduction seems to ignore. Information from Frosch and Kaplan (1999), who write about agencies that encourage and promote the use of shared decision making, will also be included in the introduction. Other information that should be filled into the general introduction includes: shared decision-making as part of preventive medicine, an elaboration of changes in informed consent, and patient autonomy.

Other edits to the article will include additions of the following headings: "Who wants to participate," "The importance of patient participation," "Physician impact," and "Cons." Other than these topic additions, information will be added to both of the current headings, "Using computers to interact with patients" and "Effectiveness of patient participation." The references that will be used are listed and detailed on this article's Talk Page. As new references are added, the reference list posted on the Talk Page will reflect these changes.

Frohmanm (talk) 12:59, 19 March 2012 (UTC)

My sandbox

As I work on this article, please visit my sandbox: My Sandbox

Recommendations are welcome! Frohmanm (talk) 23:38, 27 March 2012 (UTC)

GA Review

This review is transcluded from Talk:Patient participation/GA1. The edit link for this section can be used to add comments to the review.

Reviewer: Jmh649 (talk · contribs) 21:02, 19 April 2012 (UTC) A few comments:

1. We typically use recent secondary sources rather than primary sources. This Arora, N. K. (2000). "Patient preferences for medical decision making:Who really wants to participate?". Medical Care. 38: 335–341. doi:10.1097/00005650-200003000-00010. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help) for example is a primary source when more recent secondary sources are available such as[1]
2. Also formatting style needs improvement. Please look at other GAs/FAs for how to do this such as Urinary tract infection.

Will give you 2 weeks to address this before providing more feedback / a more in depth review. Happy editing.--Doc James (talk · contribs · email) 21:02, 19 April 2012 (UTC)

• This article incorporates material from the Citizendium article "Patient participation", which is licensed under the Creative Commons Attribution-ShareAlike 3.0 Unported License but not under the GFDL. Most likely a very big problem exists, then, wrt WP:RS. Citizendum is a user-contributed site. SandyGeorgia (Talk) 17:36, 20 April 2012 (UTC)

The merits of the content however will be based on the references found here and not on the Citizendium article. Attribution was given. I will see if the nominator replies.Doc James (talk · contribs · email) 17:43, 20 April 2012 (UTC)

Merger proposal

The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

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Although the lead section of this article indicates that patient participation and shared decision-making are synonymous, these are separate articles. Additionally, the article patient empowerment is very short and, as much of the emphasis of patient empowerment is on increasing patient participation, I believe it is also well within the scope of this article. —Shelley V. Adams 02:05, 13 July 2013 (UTC)

• I disagree that this should be merged. The term shared decision making has gained policy prominence at an international level. The 7th International Conference in Lima, Peru indicates the academic following, as well as a facebook group membership of 437 and a listserve of almost 500. The term in in the Affordable Care Act US 2010. I think there is merit in keeping the term as it stands on wikipedia.71.235.191.157 (talk) 02:36, 17 July 2013 (UTC)

I would like some more consensus to indicate whether a merge should be performed. I have also pinged Frohmanm, as you appear interested in this article per the above deposition of sources. What would the opinion be if these articles were merged into the more accepted shared decision-making article, per the above comment? LT90001 (talk) 00:04, 12 October 2013 (UTC)

I have no problem with a merger in the opposite direction of my initial proposal. Since the objections raised thus far only mentioned shared decision-making, I'm also curious whether anyone would be opposed to merging only this article and patient empowerment. —Shelley V. Adams 04:24, 14 November 2013 (UTC)

• The topics should not be merged. Shared decision making is a specific model of communication, which has its own body of research and literature. For instance, http://www.ncbi.nlm.nih.gov/pubmed/22618581 66.189.137.179 (talk) 02:27, 9 November 2013 (UTC)

• It seems to me that as written, the article on patient empowerment would be a good fit to merge with patient participation/shared decision-making. But it sounds like from some of the comments here, that there is indeed a distinction between these two concepts, but that distinction is not clear in the patient empowerment article. So therefore it needs to be improved in order to make that distinction clear. On a related note, two articles that might help shed light on the concept of patient empowerment and how it relates to other similar terms: (1) Holmstrom and Roing Patient Education and Counseling 79 (2010) 167–172, and (2) McAllister et al. McAllister et al. BMC Health Services Research 2012, 12:157 available at: http://www.biomedcentral.com/1472-6963/12/157).Emschultz (talk) 01:50, 19 December 2013 (UTC)

Have indented comments for readability. It seems clear there is no consensus for a merge between shared decision-making and this article. Is there consensus for patient empowerment and patient participation? I support the merge between those two articles. LT910001 (talk) 07:58, 14 November 2013 (UTC)

Fully agree with this support, so I merge Patient empowerment to Patient participation now. Mikael Häggström (talk) 17:21, 6 April 2014 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

Proposal to merge articles on similar concepts

The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

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I think that all of these articles are discussing the same concept by different names.

• Shared decision-making
• Patient participation
• Patient-centered care
• Participatory medicine
• Health consumerism

Each of these names seems to have is own body of literature supporting it, and its own organizations promoting one of the names, but I think that in all cases what is being discussed is patient participation in health care decisions. There is a previous merge discussion here on this talk page.

Even if there are sources which differentiate these concepts, no one has identified such sources, and in the content of these Wikipedia articles, the same concept is being discussed. Within Wikipedia, I do not think these concepts are differentiated, and because of that, I propose that they be merged until and unless someone identifies sources and provides content which distinguish them. For me, it is not enough to see that different sources use these names, because the same concept by multiple names ought to only have one Wikipedia article.

I think that "patient participation" is the best name for a single article on the concept, because this name is the most understandable in plain English while the others are jargon terms which can only be understood if explained.

If this merge does not happen, then I would like to see someone provide a source which defines any of these terms in a way that does not overlap in meaning with the others. The best kind of source would be one which defines several of these concepts and distinguishes them with different definitions. What does anyone know about this? Blue Rasberry (talk) 19:00, 23 May 2016 (UTC)

• support nice catch, picking up these overlapping articles and yes that is the correct title to pull them together under. . Jytdog (talk) 19:34, 23 May 2016 (UTC)
• Agree. SDM is the most often used term IMO. I suggest merging it all to that. — Preceding unsigned comment added by Doc James (talk • contribs) 21:33, 23 May 2016‎
• Support I support a merger of all of the above articles to one. I recommend articles be merged to the most commonly used term, and failing that, the simplest term. May I also suggest that as the mergers occur, if there is different information or substantial information from each of the articles, that it be included in the merged article for completeness. Also, the lead (or if it gets too wordy, in a separate section) should include all the different names.Calaka (talk) 05:07, 24 May 2016 (UTC)
• support merge, as they do overlap--Ozzie10aaaa (talk) 09:59, 24 May 2016 (UTC)
• comment I advertised this merge at WikiProject Medicine. I just checked to see who created these various articles. Calaka is one, but has already commented. In the case of other articles, the creators have not been active on Wikipedia in more than a year. The "revision history" tool is down right now and lately and I might check that to see if there are any other major contributors who ought to be contacted. I probably will not try to execute a merge here until July at the soonest, and then only if there is consensus. A lot of work went into these separate articles and I do not want to be hasty if these are different. Blue Rasberry (talk) 21:59, 26 May 2016 (UTC)
• Support merge of the articles listed into Patient participation, with specific types of participation (e.g., shared decision making) as sections. —Shelley V. Adams ‹blame
  credit› 00:34, 7 June 2016 (UTC)
• Support as per Shelley Adams comments. (also Patient participation gets more google hits) --Iztwoz (talk) 07:25, 9 June 2016 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

First merge

Following the above discussion I just moved

• Patient-centered care
• Participatory medicine
• Health consumerism

to this article, patient participation. I did not yet attempt to merge shared decision-making and patient participation because there is not agreement above about which article title is preferred, and because both of these articles are long. The three merged articles were shorter and used lower quality sourcing.

Looking more at the three merged articles, none of them really had good sourcing. I merged them here as one sentence only, naming them and carrying over the single best source used to define each in their own articles. I do not find any of the sources used in those articles attractive to examine thoroughly, because they are mostly older essays. Here are the archival versions of each page if anyone wants to explore preserving more from them.

• June 2016 Patient-centered care
• June 2016 Participatory medicine
• June 2016 Health consumerism

As of now, they all redirect to this article. Blue Rasberry (talk) 15:50, 30 June 2016 (UTC)

Updated the "merge from" hatnote to reflect this. —Shelley V. Adams ‹blame
credit› 13:36, 6 July 2016 (UTC)

Name: shared decision-making versus patient participation

There has to be a choice for the name for a single article that would be a merge of "shared-decision making" and "patient participation". It is not certain which name is best. Lots of sources use these names interchangeably. Lots of sources use each of these terms.

reasons for thinking the terms are equally good

1. In Google Scholar search, both "shared decision making" and "patient participation" get about 3 million hits.
2. The Wikipedia articles for each are at a similar level of development. Both have about 40 citations, have prose size of about 15kb, and are well-integrated into Wikipedia

reasons for "shared decision-making"

1. "Shared decision-making" might be better established as a term for a theory in academic literature. The Wikipedia article on the topic cites several papers presenting shared decision making as a model for providing health care.
2. "Shared decision making" gets 90 million English Google hits to 9 million English Google hits for patient participation. Wikipedia:Google searches and numbers describes when Google searches can be accurate. Multi-word terms like these sometimes are not accurately reflected by Google hits, but "Shared decision making" does seem to be the more popular term in general Google search.
3. Organizations including Mayo Clinic and AHRQ use "shared decision-making" as a preferred term
4. Google Scholar identifies several works each cited 200 times or more using the term "shared decision-making" in the title. Papers include "Shared decision making—the pinnacle of patient-centered care" and "An integrative model of shared decision making in medical encounters". It is easy to find other popular papers.

reasons for "patient participation"

1. "Patient participation" is not a technical term like "shared decision-making", and layman audiences can understand the term without having it explained. It is also a term which can be translated.
2. Patient participation is less used in academic papers talking about theory, but seems to be more used overall in academic papers because it is used in articles about specific things that patients do. At a glance of the literature, it seems like when patients do something, that is "patient participation", and when physicians design health delivery processes, they offer "shared decision-making". It seems like writers think that physicians do the sharing, not patients, so papers on shared decision making are from a physician perspective.
3. Organizations including the WHO and the NHS use "patient participation" as a preferred term
4. Google Scholar identifies several papers each cited 200 times or more using the term "patient participation" in the title. Papers include "Patient Participation in the Patient-Provider Interaction" and "Patient participation in decision-making". It is easy to find other popular papers.

I am not making a choice between these two now. In the discussion above, a few more people favored "patient participation", but still there are not so many comments on this specific issue. If anyone has further comments then share. For now, I am going to pause a bit longer. Three other article titles were just merged into this, and those can settle for a while before the next merge. Blue Rasberry (talk) 17:11, 30 June 2016 (UTC)

Merger proposal discussion cont'd

These pages should not be merged for several reasons. Shared decision making is a specific approach to the broader concept of patient participation in medical decisions and refers to a specific approach to the making of health related decisions: one that is a middle ground between the consumer focused approach and the paternalistic approach. It has its own large body of literature and its own research trajectory. Recently, the field of shared decision making has focused on implementation, and has a large inventory of associated tools (decision aids) and established training programs for health professionals. It offers a knowledge base that is distinct from that of patient participation in medical decisions. See and to show how the two concepts are nested.

Blazeware (talk) 20:45, 5 July 2016 (UTC)

I think the SDM and patient participation pages should remain separate as these are two different concepts. For example, the Cochrane Collaboration treats them separately as seen in these four different citations: For shared decision making: 1- Interventions for improving the adoption of shared decision making by healthcare professionals http://www.ncbi.nlm.nih.gov/pubmed/25222632 2- Decision aids for people facing health treatment or screening decisions http://www.ncbi.nlm.nih.gov/pubmed/24470076

For patient and public participation: 1- Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material http://www.ncbi.nlm.nih.gov/pubmed/16856050 2- Strategies for increasing the participation of women in community breast cancer screening http://www.ncbi.nlm.nih.gov/pubmed/11279781 — Preceding unsigned comment added by Patrick Archambault (talk • contribs) 21:47, 5 July 2016 (UTC)

@Blazeware and Archambault: Thanks both of you. Here are all six of those citations -

click to see

Härter, Martin; Müller, Hardy; Dirmaier, Jörg; Donner-Banzhoff, Norbert; Bieber, Christiane; Eich, Wolfgang (2011). "Patient participation and shared decision making in Germany – history, agents and current transfer to practice". Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen. 105 (4): 263–270. doi:10.1016/j.zefq.2011.04.002. ISSN 1865-9217. "Shared Decision Making: Ein Ansatz zur Stärkung der Partizipation des Patienten in der Rehabilitation". Die Rehabilitation. 42 (3): 129–135. 2003. doi:10.1055/s-2003-40097. ISSN 0034-3536. Légaré, France; Stacey, Dawn; Turcotte, Stéphane; Cossi, Marie-Joëlle; Kryworuchko, Jennifer; Graham, Ian D; Lyddiatt, Anne; Politi, Mary C; Thomson, Richard; Elwyn, Glyn; Donner-Banzhoff, Norbert; Légaré, France (2014). "Interventions for improving the adoption of shared decision making by healthcare professionals". doi:10.1002/14651858.CD006732.pub3. {{cite journal}}: Cite journal requires |journal= (help) Stacey, Dawn; Légaré, France; Col, Nananda F; Bennett, Carol L; Barry, Michael J; Eden, Karen B; Holmes-Rovner, Margaret; Llewellyn-Thomas, Hilary; Lyddiatt, Anne; Thomson, Richard; Trevena, Lyndal; Wu, Julie HC; Stacey, Dawn (2014). "Decision aids for people facing health treatment or screening decisions". doi:10.1002/14651858.CD001431.pub4. {{cite journal}}: Cite journal requires |journal= (help) Nilsen, Elin Strømme; Myrhaug, Hilde Tinderholdt; Johansen, Marit; Oliver, Sandy; Oxman, Andrew D; Nilsen, Elin Strømme (2006). "Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material". doi:10.1002/14651858.CD004563.pub2. {{cite journal}}: Cite journal requires |journal= (help) Bonfill Cosp, Xavier; Marzo Castillejo, Mercè; Pladevall Vila, Manel; Marti, Joan; Emparanza, José I; Bonfill Cosp, Xavier (2001). "Strategies for increasing the participation of women in community breast cancer screening". doi:10.1002/14651858.CD002943. {{cite journal}}: Cite journal requires |journal= (help)

Following those papers, I found one that did research on the definition of "shared decision making" and am going to add this statement somewhere:

A 2006 review of the literature found that academic papers to that point used various different definitions of "shared decision making", but that giving patients "options" and asking about "patient preference" were the most commonly included points among all definitions.

At least in this paper, there is a treatment of the definition of "shared decision making".

I also need a definition for "patient participation". Blazeware, you said that the concept of "shared decision making" was nested in the concept of "patient participation". I am unable to read those papers, because one is in German and the other I cannot access for lack of subscription. In the abstracts I do not see a definition. I really would like to find a source which gives a definition of "patient participation", and then says, "patient participation includes shared decision making, (... and other concepts, all listed)". Right now I am not seeing the list. The Nilsen paper (#5 above) says that each of these papers is a sort of patient participation

click to see

Boote, J; Telford, R; Cooper, C (August 2002). "Consumer involvement in health research: a review and research agenda". Health policy (Amsterdam, Netherlands). 61 (2): 213–36. PMID 12088893. SCHWARTZ, JL (1964). "PARTICIPATION OF CONSUMERS IN PREPAID HEALTH PLANS". Journal of health and human behavior. 5: 74–84. PMID 14184868. Mullen, P; Murray-Sykes, K; Kearns, WE (May 1984). "Community Health Council representation on planning teams: a question of politics?". Public health. 98 (3): 143–51. PMID 6739707. Crawford, MJ; Rutter, D; Manley, C; Weaver, T; Bhui, K; Fulop, N; Tyrer, P (30 November 2002). "Systematic review of involving patients in the planning and development of health care". BMJ (Clinical research ed.). 325 (7375): 1263. PMID 12458240. Whitstock, MT (May 2003). "Seeking evidence from medical research consumers as part of the medical research process could improve the uptake of research evidence". Journal of evaluation in clinical practice. 9 (2): 213–24. PMID 12787185.

but Nilsen does not say that "shared decision making" is one of the types of patient participation. I would really like to see a source which lists all the things Nilsen does, and additionally includes shared decision making in such a list. Do you know if those German papers say anything like this? Are you aware of any other paper with a good definition nesting SDM into PP?

Going forward - if I had a definition of "patient participation", then that would make it easy to keep that article. However, regardless of the current title, the Wikipedia article titled "patient participation" seems to only have content about "shared decision making". Even if the article titled "patient participation" is kept, all of the information in it which is about "shared decision making" needs to be moved to the "shared decision making" Wikipedia article. The "patient participation" article needs to list all the types of patient participation, and link to subtopics including SDM. Does that sound reasonable? I think ought to more accurate, right? Blue Rasberry (talk) 20:37, 13 July 2016 (UTC)

System and policy

I would like to add to this discussion the following aspect: the system and policy levels. They are mentioned in this context from a 2014 paper from Norway cited somewhere above. "The central arena for patient participation is the meeting between patient and health professional, but other important areas of involvement include decisions at the system and policy levels." I am personally involved in this area, and see it developing rapidly, although it might not be documented in the scientific literature yet.

Here is one example of a venue where this is happening: in the US at the Patient-Centered Outcomes Research Institute PCORI. (COI statement: I have no conflict of interest, and work pro bono in Europe.)

For a second example, consider these two authors I have met, Terry and Wilbanks, as cited in this short bibliography at a conference series, where a participant attended with whom I work. Seniorexpat (talk) 09:47, 10 April 2017 (UTC)

My current thinking is to break down patient participation into subcategories based on the following question: Patient participation in: _____[what]___?

• shared decision making (with physicians in clinical practice)
• the formation of health policy as stakeholders
• the conduct of research as stakeholders (including agenda-setting, clinical guideline development and clinical trial design)
• clinical trials as subjects

Seniorexpat (talk) 14:54, 14 April 2017 (UTC)

@Seniorexpat: I confirm that all four of those concepts could be their own Wikipedia article. I am unclear about what you would propose to break down. The current articles on "patient participation" and "shared decision making" could theoretically contain subsections on those topics, but right now, they are just about routine decisions in healthcare.

Is your idea to draft and collect content somehow for a "Patient participation in ... " article set? A problem with saying "patient participation" for policy and research is that very often non-patient community members get involved in these things, like family members, friends, or community stakeholders. That Salzburg source you presented uses "patient advocates" as the term. I think most of the literature of this sort in research and policy talks about "participation from the patient advocates" rather than "patient participation", with "patient advocates" being a term that could mean "patients who are advocating" or "peers of patients who advocate for patients". Blue Rasberry (talk) 16:41, 14 April 2017 (UTC)

I contacted a Wikipedia medical administrator and we agreed to go ahead with the long-discussed merger of the current articles Patient_participation and Shared_decision_making. I proposed then further to breakdown the former into four subcategories, one of them comprised of the latter.

Thank you for pointing out the inconsistent use of the terms. Indeed, the article Health_advocacy is better written, and presumably reflects the superior resources of Sarah Lawrence College (as evidenced in the Talk page there). Thus, some of the uses of the term "patient advocate" are in reality referring to "health advocates". However outside Sarah Lawrence College I don't see much usage of the latter. And being logical and saying "participation of health advocates" instead of "patient participation" would be going too far.

In addition, I think the articles should be internationalized, as much interesting work is taking place in the UK and the Netherlands, for instance. So I agree with your wording: a "Patient participation in ... " article set. Seniorexpat (talk) 19:34, 14 April 2017 (UTC)

I have now produced drafts, and invite you to send comments to me on the proposed new PP landing page and this new page merged from the former PP and SDM pages. When finalized, the latter is intended to become the first link in the former, i.e. as Patient participation in SDM. Seniorexpat (talk) 09:04, 19 April 2017 (UTC)

arbitrary break

It looks like there is a still a lack of clarity about which way to do the merge. In my view neither title is ideal. I would favor merging into SDM, but clarify that it is Shared decision-making in medicine, as "shared decision-making" sounds like it would be relevant to any field (like how to parent children, or how to run a business, etc). Jytdog (talk) 03:08, 11 June 2017 (UTC)

• As I stated above, I did merge the former pages in my draft. So in my draft I will gladly incorporate your suggestion to call it Shared decision-making in medicine. The draft consists of these two articles:

- Patient participation

and the subpage linked from the first

- Shared decision-making in medicine

Seniorexpat (talk) 07:40, 11 June 2017 (UTC)

Who is Taking the Lead on the Merging of the Patient Participation and Shared Decision Making Articles?

I'm writing on behalf of a group of students interested in making edits and improvements to the page on patient participation (PP). This topic was listed on the Wikipedia Requests page. Full disclosure, editing wikipedia articles is a new concept to us.

I've reviewed the above discussion regarding whether the PP and shared decision making (SDM) articles should be merged. To that end, our group would like to clarify, is there a clear consensus to merge the SDM article with the patient participation (PP) article, as stated on the Wikipedia Requests page? If so, what would happen to the SDM article? Would SDM be integrated into the PP article and therefore removed entirely? If not, would the PP article contain a link to a separate SDM somewhere in the article? We would advocate that while these two topics are closely intertwined, they are different, as SDM is one aspect of PP. Therefore we contend that PP should link to SDM.

Would the wiki community approve of our group working to update the PP page so that it complements the SDM article (rather than the current form which may conflict with the SDM). This would allow the two articles to co-exist for the time being until SMD is fully integrated into the PP article. Conversely, if you believe there is consensus that the two articles should not continue to exist separately, how would you propose that the two be combined into one article? Any clarification and direction that you can provide would be most helpful, as we would like to start working on this asap.

Here are the links to the respective pages in question: PP - https://en.wikipedia.org/wiki/User:Seniorexpat/sandbox SDM - https://en.wikipedia.org/wiki/User:Seniorexpat/subpage01

Thanks, Colin30 (talk) 14:53, 14 September 2017 (UTC)

Goals and Focus of Health Policy and Law Group A for Wikipedia Assignment

To our reviewers, This article on patient participation has been under review for a number of years and assistance with several proposed changes was posted to the Wikipedia requests page. Our group reviewed the exiting content contained in the mainspace wikipedia article for patient participation, and decided to expand this article as part of this week's assignment. Each member of the group selected a section of the article that they would research and suggest edits for.

The members of the group chose to focus on the following sections of this article,

(1) Formation of health policy as stakeholders

(2) Health 2.0

(3) Patients in clinical trials as subjects

(4) Artificial intelligence

(5) Role of entrepreneurs to bring about change

(6) Mobile health

Our goal was to add several well-referenced paragraphs (complete with proper citations) to each section mentioned above in order to make a substantial contribution to the completion of this article. We look forward to your feedback. — Preceding unsigned comment added by Colin30 (talk • contribs) 21:17, 16 September 2017 (UTC)

Formation of health policy as stakeholders section[edit]

Patient participation, as it pertains to the formation of health policy, is a process that involves patients as stakeholders, advisors and shared decision makers. The practice of engaging patients in health policy originated from the consumer advocacy movement, which prioritized consumer safety, access to information and public participation in public health programs. Depending on the context, patient participation in health policy can refer to informed decision making, health advocacy, program development, policy implementation, and evaluation of services. Patient participation in health policy can impact many different levels of the health care system. Hospitalized individuals may participate in their own medical care in an effort to make shared decisions. In other areas, patients act as advocates by serving as members of organizational and governmental policy committees.

Increased patient participation in health policy can lead to improvements in patient satisfaction, quality and safety, cost savings and population health outcomes. Involving patient participation in health policy research can also ensure that public health needs are accurately incorporated into policy proposals. When solicited for participation by policymakers and industry leaders, patients can have an impact on health policy, and both groups benefit from collaboration on goal setting and outcome measurement. By providing feedback in the form of survey responses, patients give community health officials and hospital leaders helpful feedback on the perceived quality and accessibility of health care services. Furthermore, patient satisfaction scores from these surveys have become an important metric by which hospitals are evaluated and compared to one another.

Patient participation has driven the development of a variety of health policies, ranging from the expansion of hospital visitation hours to the implementation of patient-centered bedside rounding by hospital medical teams. Patient participation has contributed to improvements in the nurse-to-nurse handoff process by engaging with staff to discuss change-of-shift information at the patient's bedside. Patient participation in care coordination has also lead to the utilization of electronic medical records that patients can access and edit. By engaging with patients and patient advocacy groups, policymakers can support patients to shape public policy. Examples include facilitation of public participation in research, town hall meetings, public information sessions, internet and mobile-based surveys and open comment periods on proposed legislation. Hospitals promote patient participation by empowering patients to serve as advisers and decision makers, including on quality improvement teams, patient safety committees, and family-centered care councils. Similarly, foundations, nonprofit organizations, and government agencies can create funding mechanisms requiring and supporting patient participation in societal decisions and priority setting. Clinicians, delivery systems, and policy makers cannot assume that patients have certain capabilities, interests, or goals, nor can they dictate the pathway to achieving a patient's goals.

References

Colin30 (talk) 02:16, 2 October 2017 (UTC)

Patients in clinical trials as subjects (Proposed Draft)

Patient participation can include a broad spectrum of activities for human subjects during clinical trials and has become associated with several other words such as “patient engagement” or “decision making.”

In the US, trends in patient participation have been influenced from a variety of sources and previous political movements. One such source for patient participation in clinical research was the AIDS epidemic in the 1980s and 1990s. During the epidemic, the AIDS activists argued not only for new clinical trial models, but for the importance of additional social service groups to support a wider range of potential human subjects. Since then, the FDA has taken several steps to include patients earlier in the drug development process. The authorization of Prescription Drug User Fee Act (PDUFA) V in 2012 included the Patient-Focused Drug Development (PFDD) initiative to provide the FDA with a way of hearing the patients’ perspectives and concerns. Similarly, the European Medicine Agency (EMA) has been attempting to incorporate patient perspectives during the evaluation of medicinal products by the EMA scientific committees.

There has been an increased interest among healthcare providers, such as nurses, in cultivating patient participation. Due to this increased interest, studies have been done to assess the benefits and risks of patient participation and engagement in research. For benefits, studies have provided results showing that patient engagement improves patient outcomes as well as clinical trial enrollment and retention. For risks, it has been proposed that the inclusion of patient participation may lead to extended research times and increased funding for clinical trials.

A few of the tools used to cultivate patient participation in clinical research have been the growth of patient organizations along with the development of databases and patient registries. These tools allow for the mass collection and dissemination of data. Registries, specifically, do not only allow patients to access personal information, but registries also allow physicians to review the outcomes and experiences of several patients who received treatment with medicinal products . Furthermore, registries and patient participation have been particularly important to the development of rare-disease medicines. In the US, the Rare Diseases Clinical Research Network (RDCRN) was created in 2003 which includes a registry for patients afflicted with a rare-disease. This registry provides information to the patients and allows physicians to contact potential patients for enrollment in clinical trials.

References

(Mtallan1013 (talk) 04:35, 27 September 2017 (UTC))

@Mtallan1013: This looks like a significant improvement for the clinical trials section of the article. A couple questions:

1. In the third paragraph, you state that "There has been an increased interest in cultivating patient participation." Who is becoming more interested in patient participation? Medical journals? Professional societies? Advocacy groups? Individual patients and/or researchers?
2. Are you planning to integrate any of the existing content? For example, the existing paragraph that describes the OpenTrials database and AllTrials campaign might complement your discussion of patient registries.

Best of luck with your assignment. —Shelley V. Adams ‹blame
credit› 19:53, 27 September 2017 (UTC)

Hi Shelly, thank you for the great comments!

1.) I have updated the third paragraph to include "such as nurses" as that's the topic for the paper referenced. 2.) I would like to keep the current information as well. I'll incorporate that information into my comments as well. Mtallan1013 (talk) 04:15, 1 October 2017 (UTC)

Proposal for updating the Mobile Health section of this page (any feedback would be greatly appreciated):

Mobile health[edit]

MHealth is bringing promising solutions to meet the growing demand for healthcare worldwide. More and more evidence suggests that the most effective treatments involve specialized, multi-faceted approaches, and require a variety of materials and effort on both the physician's and patient's end. Mobile applications serve both as methods for increasing health literacy, and as a bridge for patient-physician communication (thus increasing patient participation). There are a broad number of ways to increase participation through the use of web-based and mobile applications. Live videoconferencing appointments have proven effective, especially in the field of mental health, and can be especially significant in providing services to low resource, rural communities. Patient reminders have increased patient participation in attending preventative screenings, and it is possible that similar reminders distributed automatically via web-based application, such as patient portals, have the potential to provide similar benefits at a potentially lower cost.

To meet this demand for MHealth materials, production of patient-centered health applications is occurring at a rapid pace, with estimates of over 100,000 mobile applications available for use already.² This boom in production has lead to a developing concern regarding the amount of research and testing the application undergoes before going live, while others see promise in patients having greater access to treatment materials.² Some of that concern includes whether or not the patient will continue to use the mobile application specific for their treatment over time.² Marykatem (talk) 23:36, 29 September 2017 (UTC)

• • • • • • • • • • • • • • • • • • • • • ++

Thanks for your input, Marykatem. I've only made a few grammatical and stylistic changes. Seniorexpat (talk) 08:52, 30 September 2017 (UTC)

History of this page

I welcome the students now co-editing this page. It is gratifying to see others build upon one's own efforts. However some newcomers have -- to a large part understandably -- not adequately taken the history of this page into account. Thus, I have tried to re-establish continuity. Please remember my https://en.wikipedia.org/wiki/User:Seniorexpat/sandbox

A year ago I too was a newcomer to the page here that had SDM monopolizing the foreground. So now, respecting my predecessors, I not want to let SDM fall into oblivion, and have made some changes to re-establish continuity.

Health 2.0 is a larger trend IMHO still under-represented on the page. Perhaps it is a good area for a student to elaborate on?

As stated above in Talk, I welcome the expansion of MHealth.

Seniorexpat (talk) 09:42, 30 September 2017 (UTC)

Health 2.0 in patient participation[edit]

Taking its name from the "Web 2.0" label given to describe the social-networking emphasis of the Internet since 2004, Health 2.0 is the use of web and social networking technologies to facilitate patient and physician interaction and engagement, usually through an online web platform or mobile application. Health 2.0 is sometimes used interchangeably with the term "Medicine 2.0," however, both terms refer to a personalized health care experience that aims to increase collaboration between patients and providers, while increasing patient participation in their own health care. In addition to increased patient-physician interactions, Health 2.0 platforms seek to educate and empower patients through increased accessibility of their own health care information, such as lab reports or diagnoses. Some Health 2.0 platforms are also designed with remote medicine or telemedicine in mind, such as Hello Health. The advent of this communication method between patients and their medical providers is thought to change the way medicine is delivered, evidenced by a growing focus on innovating health technology, such as the annual Health 2.0 conference. One way Health 2.0 technologies can increase patient participation by actively engaging patients with their doctors is through the use of electronic health records, which are electronic versions of a physician's after-visit summaries. Electronic health records can also include the ability for patients to communicate to their physicians electronically for scheduling appointments or reaching out with questions. Other ways electronic health records can enhance patient participation include electronic health records that alert physicians to potentially dangerous drug interactions, reducing time to review a patient's medical history in an emergency situation, enhanced ability for managing chronic conditions like hypertension, and reducing costs through increased medical practice efficiency.

References

FiatLux19 (talk) 05:39, 1 October 2017 (UTC)

Artificial intelligence (AI) in healthcare [edit]

Once considered the domain of patients and physicians exclusively, shared decision making, also known as SDM, is allowing computers to play an increasingly important role in healthcare decision making as well. These changes specifically look to streamline medical decision making, using a variety of new tools to accomplish this. In particular, IBM's Watson has been deployed to develop streamlined response mechanisms for patients and physicians encountering difficult illnesses or disease. [21] The goal of Watson's IBM within health care may seem widespread but it aims to accomplish concrete objectives. Among these objectives are an emphasis on highlighting findings developed by Watson's computing skills and access to everyday information. A priority is to deliver concrete suggestions that will complement physician expertise and care. Doctors and patients facing rare genetically linked diseases may use the Watson for Oncology app to help. This would require hospitals having access to the program but if they do, then they can access insights and treatment options based on AI.

CafeWell Concierge, an app for Welltok, works directly with self insured customers, to provide insights for healthier lifestyle choices. Patients can receive customized insights from Welltok's app, which uses Watson's computing apparatus, about healthier markets, restaurants, and foods in their area. The goal is to eventually provide more direct access and care to patients and physicians, who can then use the highly insightful advice for their own benefit and at their own discretion.[1]

Submitted on behalf of Knc007 by Colin30 (talk) 18:21, 30 September 2017 (UTC)

The role of entrepreneurs in bringing about change [edit]

Entrepreneurs have challenged conventional health thinking in modern history. An example would be John Craig Venter's attempt to dislodge the NIH with the 1000 Genomes Project in 2008. Mike Milken, a notorious stock trader, founded an institute in his name. The Milken Institute was founded in 2008 and is based in Santa Monica, California. Following the inception of the Milken Institute, Milken launched the Fastercures program boasting a "science" of patient-input resources.[22] The Fastercures program proposes patient-center improvements and advancements in the modern healthcare arena. Among its 4 stated objectives, "Optimize use of patient data and increase patient engagement in medical research and development." is one of them. In 2010, the U.S. Government launched its own Patient-Centered Outcomes Research Institute. PCORI is striving to systematize its evaluation metrics to prove where results show improvement. [23] PCORI was created by provisions in the Patient Protection and Affordable Care Act of 2010. The 501(c) organization has faced much scrutiny over funding, when it was revealed PCORI was funded by a new tax.

Submitted on behalf of Knc007 by Colin30 (talk) 18:23, 30 September 2017 (UTC)

Note to student editors

@Knc007 and Colin30: Because footnote numbers change when references are added or removed, it is impossible to tell what source is intended when a reference number is used without a link. Please include linked footnotes in your drafts using <ref> tags and use the {{reflist-talk}} template to display a list of references at the end of a talk page section. You can find more information about how to use footnotes at Help:Footnotes. If you're using the Visual editor, see the Editing references section of MediaWiki's User's Guide Thanks! —Shelley V. Adams ‹blame
credit› 14:15, 11 October 2017 (UTC)